Why Disability Experiences Matter in Media

By Alivia Stonier

On July 16, 2003, I was born two months premature to apprehensive parents who weren't sure how their child would go on to develop after a brain bleed due to an infection that spread to my brain just hours before delivery.

What would follow for them were question marks at every stage of development, as there was no clear answer as to how exactly I would be affected by the injury. As milestones began to be slowly missed in comparison to my younger cousin born the same year, such as not quite sitting up on my own or crawling at the same pace, these questions would be given answers.

But similarly to how my parents felt in the beginning, as I began to grow and enter school, my own questions would begin to form, especially as a young child grappling with a lifelong condition which, at the time, certainly felt too vast to wrap my head around.

With no one around me in my personal support network whose disability manifested quite like mine, I found myself searching for that representation within what I always consumed: film and literature. Especially when it came to the films and television that made up my adolescence.

I don't remember truly being seen by any specific media as a child. Instead, I was left with questions about why I didn't see myself reflected in anything I was watching and, from a very young age, was aware that my daily life was something people weren't necessarily used to seeing, especially when using a wheelchair full-time as someone so young.

What struck me most outside of the media was the lack of education that would repeatedly become clear over the course of my life, even from the very adults I looked up to. My own grandmother would purchase me coloring books or makeup that you’d typically get only at places like Claire’s, even when I was seventeen.

There appeared to be a knee-jerk reaction among certain populations to turn to infantilization, seeing me as a cute miracle story. Being told that I would be prayed for every day that I clocked into my cashier job was not the compliment people thought it was. I'm not someone who needs to be fixed or felt bad for—life with a disability is simply a different definition of normalcy.

According to studies done across the U.S., 14% of the country's population is made up of people living with a disability, which roughly accounts for 44 million people. This is by no means a small figure, and yet there is still a significant gap in disability education and representation.

I was left with a feeling of dissonance between my body and my brain, and for many years, that feeling wouldn't quell. As I grew into young adulthood, I realized how little people with physical disabilities are represented in a romantic context. The sex education class at my school didn't even touch upon the subject of navigating sex with physical limitations. The impacts of that can clearly be felt, as many able-bodied people, in my experience, are left with uncertainty or hesitation surrounding the topic.

A key film that comes to mind when speaking on romance and disability is Me Before You, directed by Thea Sharrock. The film, which swept theaters in 2016, continues to make waves on TikTok even as we approach a full decade since its release.

The project is an adaptation of the novel of the same name by Jojo Moyes. This was the first major film I saw with a disabled protagonist within this genre, and after entering the theater with excitement, I remember sitting down to watch it with my mom and sister, only to leave deeply disappointed, with a sinking feeling in my stomach.

Despite the chemistry the movie spent its runtime building and the dry charm portrayed by Sam Claflin, the undercurrent of the entire film is deeply rooted in ableism.

Claflin’s character, William, for those unfamiliar, decides two years after the accident that left him quadriplegic that he wants to euthanize himself. In a last-ditch effort, his mother hires a caretaker to cheer him up. Enter Louisa Clark, played by Emilia Clarke. The pair have a slow-burn progression, with William’s initial frosty demeanor eventually growing thin.

However, despite the believable chemistry between the two, there are two glaring issues with the film. The first is that Louisa believes she can be the sole reason he decides to live. Similarly to his family, she is distraught by the knowledge that he wants to die, as anybody would be. The issue arises when there is genuine frustration at her acts of kindness not leading to a change of heart.

Me Before You (2016)

The larger issue is that, in the end, William ultimately decides to take his life, despite finding love and seeing the light that life can still have, even with a disability. Yes, this can be a reality for some, especially in their darkest moments. But for the film to not only affirm these thoughts but allow the character to leave a letter expressing that he killed himself because he didn't want to become a burden to the woman he loved so she could enjoy a "better" quality of life leaves the audience with the idea that it is somehow romantic for a disabled person to remove themselves for the sake of an able-bodied loved one.

Had the film made it clear that the character chose to live for himself on his own terms and not because his romantic interest saved him, and had it not romanticized the idea of alleviating the struggles that can come with caring for someone with a disability, it could have been a beautiful piece of media for people with disabilities to feel uplifted and truly represented. It's undeniable that the film brings a lot of beloved elements to these characters, such as their wit, but that isn’t enough to save it from its failures. Many critics at the time of its release mirrored these concerns, including multiple top critics from Rotten Tomatoes.

It's undeniable, though, that the general public had a positive takeaway, and in my opinion, that skewed view of the disabled experience can be detrimental to those living it as their reality.

The other key piece of media that stands out is Netflix's Sex Education, this time, for all the right reasons. In Season 2 of the series, Isaac Goodwin was brought to the screen by actor George Robinson, who was able to source from his real-life experience as a wheelchair user with a spinal cord injury.

The intimate scene between Isaac and Maeve Wiley, a main character, brought me to tears the first time I saw it. The scene gave a realistic look into intimacy, with proper communication and a lack of judgment. As a result, it leaves you with a feeling of tenderness that feels human and normal, two people who simply like each other and are navigating a relationship with challenges, just as anyone can.

Throughout the series, Isaac engages in multiple relationships, facing struggles that aren’t rooted in stereotypes but in genuine, everyday experiences, from inaccessible elevators to social dynamics. The show handles his disability with empathy and respect, steering clear of pity.

This is what it took for me to be blown away by proper representation, by listening to real-life experiences and allowing actors with disabilities to bring authenticity to their roles. This is the education that is lacking in so many places, including Hollywood, which has led to misguided depictions like those in Me Before You.

Wicked (2024)

If young people can continue to see this caliber of representation on screen, there's a chance that someone out there, whether they are newly diagnosed or growing up with a disability as I did, will feel less lost when navigating these elements of life.

It can also allow for peers to move past hesitation and misconceptions. People with disabilities, like everyone else, are capable of fulfilling relationships and rich, complex lives.

A step in the right direction is inclusion without centering everything around disability. One example is the animated Spider-Man: Across the Spider-Verse, which featured a wheelchair user simply playing sports with their friends.

The more we can educate the public on disabilities and normalize these experiences through popular mediums like film and television, the closer we get to genuine equity in our society.

As highlighted by the Ruderman Family Foundation, despite 20% of the population having disabilities, only 1% of television represents this lived experience. Another study conducted by actor Danny Woodburn found that only 5% of disabled characters are portrayed by actors with disabilities.

Without real lived experience in these roles, stereotypes and guesswork cloud the potential for true representation. As we move through the 2020s, it's time to see more representation like George Robinson, Regan Abbott (A Quiet Place), and Marissa Bode (Wicked), as well as disabled writers being brought into these conversations.

A Quiet Place (2018)

The next time you watch a film with a character facing a disability ask yourself what conversation it brings to the table for you about the disabled experience, and for those with disabilities wanting to break into positions within media your voice deserves to be heard authentically.